A summary of SGIS CRG policy, strategy and initial draft recommendations to NHS England

1. A summary of SGIS CRG policy, strategy and initial draft recommendations to NHS England Presented by Dr John Dean SGIS CRG, 20th March 2014

2. Policy 1 People with concerns regarding gender identity, including those who have experienced atypical gender identity development, should have access to healthcare provided by the NHS that meets their needs with respect to: • Professional assessment of their gender identity development and their current situation with respect to gender • Opportunity to discuss their aspirations and future goals for gender development • Provision of information that will enable them to make informed choices about their future with respect to gender, including how, and to what extent, the NHS might help them

3. Policy 2 The NHS will provide the following services for people with concerns regarding gender identity, including those who have experienced atypical gender identity development: • Primary and secondary healthcare services to meet day-to-day needs that are unrelated to gender and gender identity development • Specialised Gender Identity Services (SGIS) for persons aged 17 years and older*, usually accessed through primary care referral, which provide or recommend • Assessment, diagnosis, information-giving, advocacy, planning of care • Interventions to facilitate desired changes in psychological well-being, social role and physical sex characteristics • Collaboration with primary care providers to achieve shared delivery of care • Primary healthcare services to meet day-to-day needs that are related to their gender-specific past, present, and future after discharge from SGIS *Services for people aged under 17 are addressed by Child and Adolescent SGIS, as a part if the Highly Specialised Services CRG

4. Policy 3 Providers of NHS England-commissioned SGIS should • Provide equity of access to care • Provide choice and broad equity of treatment experience to service users • Value diversity and respect personal dignity • Deliver care to national quality standards • Be patient-centred, evidence-based, cost-effective • Strive to deliver patient satisfaction • Conform to all other principles of the NHS Constitution • Evaluate clinical performance, including assessment of patient satisfaction, through systematic data collection • Plan for the future in partnership with NHS England and service users

5. Policy for transfer between SGIS, and from CAGIS to SGIS Transfer between adult services: Transfer between services without undue delay is essential • Gender consultants and specialists should recognise the expertise and opinion of colleagues in other gender identity services when a person transfers from one gender identity service provider and another • Patients have a right to a second, independent opinion from another SGIS provider Transfer from adolescent to adult services: The transfer of care of patients from adolescence to adult services should be without interruption of care and, wherever possible, through joint appointment • Treatments that have been initiated for adolescents should continue without interruption • Where treatment has not yet been undertaken, it may be started in a timely manner, taking account of the young person’s clinical and social history

6. Strategy 1 CRG to develop draft service specification for SGIS • Evaluate all interventions for GD endorsed by guidelines at category-level (i.e. hormone therapy?) not at detail-level (i.e. which hormone?) • Define interventions • Review best practice recommendations If adequate evidence that intervention is effective, safe and adequately tolerated… • Assess cost and patient burden • Agree delivery process • Agree outcome measures and quality standards

7. Strategy 2 CRG chair to present draft service specification at Stakeholders’ Meeting on 20th March 2014, in order to… • Explain which interventions for GD are considered by CRG to be effective, safe and adequately tolerated • Discuss these interventions, taking into consideration cost and patient burden, and then gather stakeholder views on… • Which are essential (the minimum interventions required for provision of an acceptable service; an indivisible package; the “core service”) • Which are desirable , ranking these other interventions in order of priority • Discuss general principles of delivery processes, outcome measures and quality standards • Stakeholder views will inform the CRG when developing their final recommendations to NHS England

8. Strategy 3 • CRG to write, and submit to NHS England, a policy recommendation, based upon CRG discussion, NHS review report and stakeholder feedback, recommending… • Interventions that should be funded by NHS England for all patients with GD as core components of SGIS (an indivisible care package; the minimum interventions required for provision of an acceptable service) • Interventions not recommended for funding as a core component, but as appropriate for funding within SGIS provision when possible, ranked in order of priority for inclusion • CRG to write, and submit to NHS England, a draft 2014/15service specification that only includes interventions specified in point 1, above

9. Strategy 4 • CRG service specification and policy recommendations will be reviewed by… • NHS England Mental Health Programme of Care Board (PoC Board), then… • Financial impact assessment, then review by… • NHS England Clinical Priorities Assessment Group (C-PAG) • CRG will respond to feedback from, firstly, PoC Board and, secondly, CPAG, and will seek to influence the formal consultation versions • Consultation versions of both documents will be published for formal consultation • The consultation will provide a final opportunity for stakeholders to give feedback and influence the 2014/15 SGIS Service Specification and Policy • After consultation, the final 2014/15 SGIS Service Specification and Policy will be published and implemented with ongoing review

10. Organisation of service provision Specialised component • Currently delivered by seven SGIS provider clinical networks in England • Structure: GIC + surgery providers + SLT provider + epilation provider; collaboration with GP • Other providers and provider models might be commissioned provided that they are capable of delivering SGIS policy objectives and maintaining quality standards • New GICs based in secondary care settings, structured as above • GP led, primary care-based clinical networks • Structure: GP specialist + therapist + endocrinologist +surgery provider + SLT provider + epilation provider • All SGIS providers should engage in a national quality network Non-specialised component • Service users need primary care services from GPs, including prescribing and monitoring of SGIS-recommended care • Shared care agreement and commissioning will need to be negotiated with BMA GPC

11. SGIS interventions CRG initial recommendations for content, access and eligibility NHS | Presentation to [XXXX Company] | [Type Date]

12. Interventions considered • Specialised psychological therapies • Gamete storage • Endocrine therapy • Voice and communication therapy • Phonosurgery • Facial epilation • Donor site epilation • Bilateral partial mastectomy and masculinising chest reconstruction • Genital reconstruction (reassignment) surgery • Hysterectomy and BSO • Augmentation mammoplasty • Orchidectomy • Thyroid chondroplasty • Feminisingrhinoplasty

13. Explanatory notes • Interventions are described at category-level (i.e. hormone therapy?) not at detail-level (i.e. which hormone?) • UKGPG* are the overarching guide to clinical practice • The GMC requires doctors to use clinical judgment in interpreting guidelines • Not all interventions recommended in UKGPG will be funded by NHS England • Eligibility criteria listed in following slides are the only criteria specifically required to fulfil SGIS policy • SGIS providers should additionally observe criteria prescribed in UKGPG • Additional eligibility criteria should not form part of a SGIS provider’s routine clinical practice * Good Practice Guidelines For The Assessment And Treatment Of Adults With Gender Dysphoria (RCPsych Report CR181, October 2013)

14. Specialised psychological therapies CRG recommendation: Specialised psychological therapies should be available to all patients as a core service Recommended by UKGPG 2013 and WPATH SoC v7

15. Gamete storage • CRG recommendation: • Gamete storage for trans people should beavailable as a core procedure Eligibility criteria: • Not currently receiving endocrine therapy Recommended by UKGPG 2013 and WPATH SoC v7

16. Endocrine therapy CRG recommendation: Endocrine therapy to facilitate changes in psychological well-being, social role and physical sex characteristic development should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • decision to proceed with endocrine treatment will usually involve a single opinion from a member of the gender identity team Recommended by UKGPG 2013 and WPATH SoC v7

17. Voice and Communication Therapy CRG recommendation: Voice and Communication Therapy should be available as a core service but only to patients meeting specific eligibility criteria • Eligibility criterion: Trans person living exclusively in social role congruent with gender identity Recommended by UKGPG 2013 and WPATH SoC v7

18. Phonosurgery (voice-modifying surgery) CRG recommendation: Phonosurgery (which may include thyroid chondroplasty) should be available as a core procedure, but only to patients meeting specific eligibility criteria Eligibility criteria: • living exclusively in congruent social role • assessed by SL therapist as (i) not achieving realistic goals through conservative SLT process and (ii) may benefit from phonosurgery • if GRS planned, person is at least 6 months post-GRS • assessed by surgeon as able to benefit from phonosurgery • patient makes commitment to engage in SLT after phonosurgery Recommended by UKGPG 2013 and WPATH SoCv7

19. Facial depilation CRG recommendation: Facial depilation should be available as a core service for all patients • Treatment is intended to reduce gender dysphoria associated with facial hair growth • Complete and permanent removal of all facial hair is not possible • The completion of treatment will be a clinical judgment of the epilation practitioner, made in consultation with the gender specialist team and patient • Further treatments for recurrence of facial hair growth after completion of an initial epilation package are not a core component of treatment Recommended by UKGPG 2013 and WPATH SoC v7

20. Donor site depilation CRG recommendation: Donor site depilation should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria • Intention to refer for GRS • Clinical need for donor site depilation Recommended by UKGPG 2013 and WPATH SoC v7

21. MasculinisingGRS CRG recommendation: Masculinising GRS should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • 12 months’ continuous endocrine treatment as appropriate to the patient’s goals (unless the patient has medical contraindications or is otherwise unable to take hormones) • at least 12 months’ living continuously in a gender role that is congruent with the gender identity • decision to proceed with GRS will require two specialist opinions, usually from members of the gender clinic team or network Recommended by UKGPG 2013 and WPATH SoC v7

22. Hysterectomy and bilateral salpingo-oophorectomy CRG recommendation: Hysterectomy and bilateral salpingo-oophorectomyshould be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • 12 months’ continuous endocrine treatment as appropriate to the patient’s goals (unless the patient has medical contraindications or is otherwise unable to take hormones). • Hysterectomy and/or salpingo-oophorectomy requires two opinions, usually from members of the gender clinic team or network (one letter may have two signatories) • None of these criteria would apply to medical conditions requiring advice, opinion or treatment from a gynaecologist or oncologist, where direct referral is appropriate. Recommended by UKGPG 2013

23. Masculinising chest reconstruction surgery CRG recommendation: Bilateral partial mastectomy and masculinising chest reconstruction surgery (CRS) should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • decision to proceed with CRS requires a single opinion from a gender specialist Recommended by UKGPG 2013 and WPATH SoC v7

24. Feminising GRS CRG recommendation: Feminising GRS should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • 12 months’ continuous endocrine treatment as appropriate to the patient’s goals (unless the patient has medical contraindications or is otherwise unable to take hormones) • at least 12 months’ living continuously in a gender role that is congruent with the gender identity • decision to proceed with GRS will require two opinions, usually from members of the gender clinic team or network Recommended by UKGPG 2013 and WPATH SoC v7

25. Bilateral orchidectomy CRG recommendation: Bilateral orchidectomyfor should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • 12 months’ continuous endocrine treatment as appropriate to the patient’s goals (unless the patient has medical contraindications or is otherwise unable to take hormones) • at least 12 months’ living continuously in a gender role that is congruent with the gender identity • decision to proceed with GRS will require two opinions, usually from members of the gender clinic team or network Recommended by UKGPG 2013 and WPATH SoC v7

26. Augmentation mammoplasty CRG recommendation: Augmentation mammoplasty (AM) should be available as a core service but only to patients meeting specific eligibility criteria Eligibility criteria: • Persistent and well-documented gender dysphoria • Capacity to make fully informed decisions and to consent to treatment • If significant medical or mental health concerns are present, they must be reasonably well controlled • Completed 24 months’ endocrine therapy providing gender identity-appropriate serum oestradiol and testosterone levels prior to AM • Completed breast development (usually Tanner stage 4/5) but has not achieved treatment goals • Decision to proceed with AM requires a single opinion from a gender specialist Recommended by UKGPG 2013 and WPATH SoC v7

27. Feminisingrhinoplasty CRG recommendation: Feminisingrhinoplasty is not recommended as a core procedure but should be considered by NHS England for funding as a part of the SGIS care pathway when possible Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • decision to proceed with FFS requires a single opinion from a gender specialist Recommended by UKGPG 2013 and WPATH SoC v7

28. Thyroid chondroplasty CRG recommendation: Thyroid chondroplasty is not recommended as a core procedure but should be considered by NHS England for funding as a part of the SGIS care pathway when possible Eligibility criteria: • persistent and well-documented gender dysphoria • capacity to make fully informed decisions and to consent to treatment • if significant medical or mental health concerns are present, they must be reasonably well controlled • decision to proceed with FFS requires a single opinion from a gender specialist Recommended by UKGPG 2013 and WPATH SoC v7

29. Summary draft recommendations • Specialised psychological therapies • Gamete storage • Endocrine therapy • Voice and communication therapy • Phonosurgery • Facial epilation • Donor site epilation • Bilateral partial mastectomy and masculinising chest reconstruction • Genital reconstruction (reassignment) surgery • Hysterectomy and BSO • Augmentation mammoplasty • Bilateral orchidectomy For future consideration… • Thyroid chondroplasty • Feminisingrhinoplasty